The Talk from Dr

So the Dr had the 'quality of life' talk w us. Our son was born at 25weeks and has a grade 4 bleed. He started having seizures and his BP is fluctuating to extreme highs and lows. The Dr isn't optimistic and basically told us that the day will come when we have to make a decision about whether to continue his care or not. He listed all the possible mental/physical disabilities he could have, indicating that there is damage to his brain and there is no way to know the extent of it. Needless to say, it was a heartbreaking day for us. Poor little guy is fighting so hard.

So the Dr had the 'quality of life' talk w us. Our son was born at 25weeks and has a grade 4 bleed. He started having seizures and his BP is fluctuating to extreme highs and lows. The Dr isn't optimistic and basically told us that the day will come when we have to make a decision about whether to continue his care or not. He listed all the possible mental/physical disabilities he could have, indicating that there is damage to his brain and there is no way to know the extent of it. Needless to say, it was a heartbreaking day for us. Poor little guy is fighting so hard.

We had that talk to, only before he was born. The Dr thought I was an idiot for even trying. He wasn't supposed to live 2 weeks. He is now 2 years. He has issues- a major heart condition (the main reason for not making it), chronic lung disease (Mp+vent), brain cysts (never saw the bleed, they didn't check for awhile since he wasn't going to make it anyway.) which caused a weakness on his right side, muteness, and loss of vision (not sure how bad yet) in his right eye. But cognitively he is actually at or above his adjusted age. He is very silly and curious. He uses sign to communicate, just started walking without a walker, uses a hand brace on his right hand, and ankle braces.

Honestly the whole QoL thing ticks me off. Who do you think is a happier person, a Dr or someone with Downs?

My suggestion: kangaroo(skin-to-skin) as much as you can (if they protest "he isn't going to make it anyway right?"), make sure he only gets Breastmilk (yours has stem cells!), "swaddle" him in the tank, and spend as much time as you can with him (just make sure you eat, sleep and pump).

Worst case.. You will know you did everything you could, and you will be glad you have the memories.

This may help: http://froginstitches.blogspot.com/p/nicu-info.html?m=1

Leave me a comment if I can help ( don't get WTE messages)

We had that talk to, only before he was born. The Dr thought I was an idiot for even trying. He wasn't supposed to live 2 weeks. He is now 2 years. He has issues- a major heart condition (the main reason for not making it), chronic lung disease (Mp+vent), brain cysts (never saw the bleed, they didn't check for awhile since he wasn't going to make it anyway.) which caused a weakness on his right side, muteness, and loss of vision (not sure how bad yet) in his right eye. But cognitively he is actually at or above his adjusted age. He is very silly and curious. He uses sign to communicate, just started walking without a walker, uses a hand brace on his right hand, and ankle braces.

Honestly the whole QoL thing ticks me off. Who do you think is a happier person, a Dr or someone with Downs?

My suggestion: kangaroo(skin-to-skin) as much as you can (if they protest "he isn't going to make it anyway right?"), make sure he only gets Breastmilk (yours has stem cells!), "swaddle" him in the tank, and spend as much time as you can with him (just make sure you eat, sleep and pump).

Worst case.. You will know you did everything you could, and you will be glad you have the memories.

This may help: http://froginstitches.blogspot.com/p/nicu-info.html?m=1

I am praying for your little guy... my step mom had twins and the little girl had the severe brain bleed which resulted in her being on life support and no chance of recovery at that point my parents made the decision to let her go... however my brother has a minor brain bleed but he is doing well he is 7 weeks still in nicu but still doing fine... bedtime of luck to yours... I say do all you can until they prove there's nothing more to do...

I am praying for your little guy... my step mom had twins and the little girl had the severe brain bleed which resulted in her being on life support and no chance of recovery at that point my parents made the decision to let her go... however my brother has a minor brain bleed but he is doing well he is 7 weeks still in nicu but still doing fine... bedtime of luck to yours... I say do all you can until they prove there's nothing more to do...

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